We are so thankful that we went to Cleveland Clinic. We feel like most of our questions have been answered and that we have the confirmation we need in order to move forward...though they weren't quite the answers we were hoping for. The drs felt like Sadie's EEG was in line with the the original diagnosis of Benign Rolandic Epilepsy. Her EEG was still abnormal and very active at night, meaning that it was misfiring while she slept. She does have electrical discharges while she is awake but they are not as frequent and consistent as when she's asleep. Sadie never did have a seizure while we were there and that was super frustrating! In the end, we have to know that it just wasn't necessary for them to make a decision. She did have some of her usual wakings at night with her trembling. These episodes did not have any changes on the EEG and were diagnosed as Parasomnias ( which is one of the first things she was diagnosed with back when all this started in 2011). Parasomnias are a spectrum of sleep disorders that she will outgrow.
So with all of their observation and readings of the EEG, they felt like her epilepsy falls right in line with the Benign Rolandic Epilpesy diagnosis. They encouraged us to come off of some of the medicines she is on since it really wasn't doing her much good. There was no real change in her EEG with or without the medicine. So we already came off of one and will work to move off the other med soon. If all goes well and her nights seem to remain consistent, the goal will be to remain on the one seizure medicine. This was encouraging to realize that not all her night episodes are seizure related. So while we were thinking they were, we continued to chase a medicine that would calm down the electrical discharges as well as seizures. With this new information, we see that we were chasing something that really might not have been there. This relieves a great deal of stress trying to find the right medicine to work for her.
That leaves us with the cause of the developmental delay...upon closer inspection of Sadie's MRI, Dr. Lachwanni said that her brain structure pattern showed signs that her developmental issues may be more related to her brain development and less caused by her seizures. Although the Birmingham doctor said the MRI was normal, Both Dr. Lachwanni and Dr. Brad felt like her developmental delays may be a more permanent issue. Only time will tell exactly what challenges Sadie will face as she gets older.
Although this was not easy to hear, it was reassuring to know that we are doing all we possibly can do for Sadie. Please continue to pray for Sadie and for us as we process this news.
This would be very overwhelming if it wasn't for the faithfulness and goodness of God, which our hope rests in and which we have already experienced so much through this journey. We look to the promises of God (Romans 8:28, Matthew 6:25-34, John 9:1-3) to encourage us as we take things one day at a time.
Thanks for joining us in our journey. We are blessed to have such amazing family and friends to support us along the way.
1 comment:
Sweet friends...my heart is tender for you. Praying He continues to lavish His grace upon you...that His strength would continue to be sufficient. We love ALL of you!
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